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  #31  
Old 9th March 2010, 12:27 PM
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Default Re: Went To Scoliosis Sos Today

Luckily there are plenty of options on the NHS if people don't wish to pay thousands of pounds to a private clinic. I had amazing results from a free NHS inpatient programme run by the Pain Clinic at my hospital - I spent three weeks doing intensive physio and hydrotherapy amongst other things. An advantage of this was that I was checked by a qualified spinal surgeon rather than just by the physiotherapists.

If anyone is in a lot of pain I can really recommend getting referred to a Pain Clinic in the first instance, and take it from there. They are run by doctors who are specialised in pain management and have more options for pain relief than the GPs can offer.
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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  #32  
Old 9th March 2010, 12:48 PM
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Default Re: Went To Scoliosis Sos Today

Hi Sue

Sorry if i came accross as sarcastic that was not my attention, i sometimes don't think before i write and i very rarely read them back

I'm pleased you have found a way to take charge of your scoliosis and you have had a positive experience with this clinic

Its just we have had an awful lot of discussions with this clinic who's owner pops up every know and again with a thread advertising her services and when asked a few questions ignores them all, which is that persons right as an individual but it did smack of blatant advertising and that is something that this site does not tolerate or accept

I hope you manage to control your pain through exercise and if you get any correction to your curve then that is a bonus, you are more than welcome here and i hope we can support you through any rough times you may have

Sorry once again if i came accross all arsey

AND WELCOME TO SSO

Mark
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  #33  
Old 9th March 2010, 02:55 PM
stana29 stana29 is offline
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Default Re: Went To Scoliosis Sos Today

Hello,

I would like to add my opinion about the Scoliosis SOS clinic and Joanna Slup.

As some of you know, my daughter Jessie has neuromuscular 59 degree thoracic curve a and a tumour wrapped around her spine and inside of her spinal canal. Because of this complexity, a surgery to insert the spinal growth rods in order to straighten her spine cannot be done without actually removing the tumour which in this combination (tumour resection + rods) never been done in the UK.

This complexity made me to explore alternative treatments and I am glad for it.

My daughter has been wearing Cheneau back brace for the last 14 months and her scoliosis has been stable, prior to this she wore Boston brace (measured for not casted) and her scoliosis progressed from 23 degrees to 59 degrees in 18 months. So I can say that every penny was worth spending on the Cheneau brace which unfortunately is not available on the NHS.

Needless to add that Cheneau brace in combination with visiting rehabilitation centres for children as well as adults is a norm in mainland Europe (Germany, Spain, France, Czech Republic, Slovakia, and Poland).

Children visit scoliosis rehab centres for 6 weeks every year and work hard on strengthening their tummy and back muscles weakened by wearing their back braces, where they swim, relax in Jacuzzi, receive massage, do yoga, Pilates etc. In addition, most of those centres follow methods such as Katharina Schroth, Vojta, Kubat etc.

Can somebody please direct me to a centre that offers something similar in the UK paid for by the NHS? Well, I haven't found any.

Anyway, to cut the story short, I do believe that Schroth method is an amazing method and anyone having an insight into how this method actually works will agree with me. The exercises are logical as well as thoroughly thought through.

My daughter is lucky enough to be taught this method by Joanna Slup in London and I cannot praise Joanna's dedication to my daughter’s physio regime highly enough. She regularly visits Germany and K. Schroth centre where she updates her knowledge. Anyone considering learning of this method, visit her and see it for yourself. Joanna is dedicated and her true motive behind her business is making you feel better not make money out of you.

We also visited the Scoliosis SOS centre in Ipswich and my honest opinion and feeling about this centre in not that great. I felt the pressure for signing up and all my questions were not answered, however when I spoke to the ladies exercising there, they could not praise this centre more.

It is difficult to make a choice, especially when high costs are involved but at least the choice is here and I am sorry some might not like this but what is NHS doing for children with scoliosis apart from a surgery? Not much, really! I asked numerous of times about physio for children with scoliosis (not suffering from pain) and the answer was that exercises don't help!!! Well, in my opinion (yes, I am not an expert and doctor by any means), exercise work in a way of strengtening you muscles that hold your back in tact, but the very limited NHS budget does not give our children much choice, does it? You tell me, why on earth would all those mainland countries send all scoliosis children to scoliosis rehab children to exercise and possibly avoid or postpone surgery if they believed it doesn't work???



Stana






Hi Curvyclaire, welcome to SSO

We have had members in the past who have been to both Joanna Slup and to Scoliosis SOS. They offer different treatments, in that Joanna Slup is a certified Schroth physiotherapist and thus teaches the Katherina Schroth Method, and Scoliosis SOS provide their own brand of physio called "Scoliogold".

Joanna Slup's clinic is registered with the CareQuality Commission, which regulates private healthcare clinics in the UK to ensure that patients are safe and get good treatment. From this year, all clinics must be registered with them.

Welcome again,

Toni xx

Last edited by stana29; 9th March 2010 at 03:04 PM. Reason: spelling
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  #34  
Old 9th March 2010, 03:20 PM
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tonibunny tonibunny is offline
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Default Re: Went To Scoliosis Sos Today

Hi Stana,

It is great that Jessie has been doing so well with her Schroth. I believe Beanstalk's daughter has also been doing very well under the guidance of Joanna Slup You are (as far as we know) the only SSO members who have been to her, and both of you have given very favourable reports about her, which is very encouraging. She is certified by the Schroth clinics, continues to update her knowledge, and her clinic is regulated so patients are protected should something go wrong - this all sounds good to me!

My post here was in reference to adults who are suffering with pain, rather than children. There are a lot more options available to adults with chronic pain - and the three weeks I spent on the programme in Oswestry did include intensive physio, hydrotherapy, pilates, and yoga with an emphasis on building core stability and strength, as well as a lot of education about a variety of issues.

As you say, I don't believe anything like this exists for children, which is a terrible shame. For adults like CurvyClaire though, who have stable curves but are living with chronic pain, things are available on the NHS, and I do think it would be worth looking at these first in case help can be had for free before considering paying thousands of pounds privately.

Toni xx
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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  #35  
Old 9th March 2010, 04:55 PM
stana29 stana29 is offline
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Default Re: Went To Scoliosis Sos Today

Hello,

It's great to hear that there are such treatments available for adults, however wouldn't that be great to have something like this for chidren in order to give them a change of working on their curves?

I agree it's wise to investigate the NHS treatments before going privately.

Beanstalk's daughter's curve has apparently improved so that's great news and Jessie's is stable which I guess gives us time to consider what to do next with her future complex surgery.

Stana x

Last edited by stana29; 9th March 2010 at 04:55 PM. Reason: spelling
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  #36  
Old 9th March 2010, 09:38 PM
cloudgazer cloudgazer is offline
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Default Re: Went To Scoliosis Sos Today

Hi,
Ive been to Scoliosis SOS and can only echo post above. It helped enormously with pain and my posture's a bit better too.
Its interesting because at the moment I cant do my prescribed exercises (because I've had a minor operation), and I can REALLY feel the difference. My back is aching and creaking (yes creaking!) all the time! It doesn't do that when I'm doing the exercises regularly.
I find fitting in the prescribed amount of exercises (30 mins for most people but 45 mins for me ) into daily life difficult as I work long hours, but now I know what its like to be without them, I am looking forward to getting back into them.
I think its good to be open minded to all types of treatment, including surgery, so go with whatever feels best for you.
Good luck.
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  #37  
Old 10th March 2010, 01:36 PM
Sue T Sue T is offline
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Default Re: Went To Scoliosis Sos Today

Quote:
Originally Posted by mark View Post
Hi Sue

Sorry if i came accross as sarcastic that was not my attention, i sometimes don't think before i write and i very rarely read them back

I'm pleased you have found a way to take charge of your scoliosis and you have had a positive experience with this clinic

Its just we have had an awful lot of discussions with this clinic who's owner pops up every know and again with a thread advertising her services and when asked a few questions ignores them all, which is that persons right as an individual but it did smack of blatant advertising and that is something that this site does not tolerate or accept

I hope you manage to control your pain through exercise and if you get any correction to your curve then that is a bonus, you are more than welcome here and i hope we can support you through any rough times you may have

Sorry once again if i came accross all arsey

AND WELCOME TO SSO

Mark
No worries Mark I have to admit that I was rather taken aback by your reply- however after your next reply to my explanation- I do understand thank you for your apology tho' you needn't have done that but thankyou and I accept with 'grace' (whoever she is???).
I really would like to point out that I am not a P.R. for the SOS Clinic. I just wanted to share my success with all of you SSO members, because I thought that it may help someone out there! I would also like to say that I would still advocate stronglyto anyone with scoliosis or a similar condition to seek out NHS expert advice at all times.
I had big discussions with my GP before committing to the SOS course and I was very sceptical that I would get anything from going, (I am a six hour drive away from Suffolk) also, would I actually be able to do the exercises or complete the course?
However I did mention in my original letter, that it was not without it's problems for me. Without going into too much detail and becoming 'a pain-in-the-back' - basically I have damaged my Latissimus Dorsi muscle (think I may have 'overstretched 'myself!ha! ha!) Any advice from anyone PLEASE? xx
Have been to osteopaths/chiropractors tried Bowen and also had a new xray and scan via a NHS physio consultant, who, incidently was wery impressed with the changes in my back.
Many thanks for bearing with me
Regards Sue T x
(would 'love' to use one of those 'smiley' things for all of you but I can't seem to work out how I can do that Yet)
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  #38  
Old 10th March 2010, 02:04 PM
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tonibunny tonibunny is offline
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Default Re: Went To Scoliosis Sos Today

Hi Sue,

Are you under the care of an NHS spinal consultant (ie a doctor), rather than a physio? And has the Latissimus Dorsi pain been going on for long? Hopefully it's just a temporary pull rather than an ongoing thing.

Which hospital did you attend when you were younger, and do you know the degree of your curvature? It sounds like the Milwaukee brace worked well for you, as you had scoliosis at 8 and managed to avoid surgery - you did very well there! Juvenile scoliosis is often very progressive.

Toni
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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  #39  
Old 10th March 2010, 07:06 PM
Sue T Sue T is offline
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Default Re: Went To Scoliosis Sos Today

Thank you Toni for taking the time to reply.
I was signed off from my last consultant because he could not go any further regarding my pain pre SOS, hence
I don't see one anymore,I feel I've gone as far as I can with them. I have been offered op's and more braces/corsets- but having spent 5/6 years of my teen years in such things,and ,yes, they really helped me in those growing years. This was my reason for searching for something alternative and I found it and it certainly works for me, but, at the same time I think the exercise have triggered this pain in my Lat.D.muscle - I been back to the clinic several times and had my exercises revised but the pain is still oncoming (bit of a catch 22?) I thought that perhaps it would ease but its been over a year now, hence my visits to chiros etc. everyone wants to help but unfortunately don't seem to!
I'm very happy to work at it because now I feel the way for pain relief,for me, is exercise and I am trying to work through it! That's why I wondered if anyone in the forum
had any ideas?
You ask about any consultants I have seen Toni? I would imagine the names would mean nothing to anyone as I should think they have all passed away, I was very blessed to have seen someone who was top of the field in scoliosis at the time,dare I say in the 1950s - a Mr Griffiths from Manchester Royal he also had a big interest in a place in Owestry! Thank you for reading this.
Regards Su T x
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  #40  
Old 10th March 2010, 07:36 PM
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Default Re: Went To Scoliosis Sos Today

Ouch, do you know what's causing the pain - is it that the muscle is in spasm, or do you have pinched nerves underneath?

Have you ever been referred to a pain clinic, and tried things like trigger point/nerve blocking injections? There are plenty of nonsurgical options for pain relief that can be tried, but you need to see a specialist pain doctor rather than a physio for many of them. Do you take any painkillers? If your pain is neurological in origin, many of us have amazing relief from a drug called gabapentin. Similarly, amitriptyline can work wonders for muscle spasms.

It sounds like your scoliosis has been stable for years (otherwise it would have progressed a lot by now) so I doubt any surgeon would want to actually fuse your spine, but if you have a trapped nerve or bulging disc then a tiny surgery could help enormously.

If you're still in that corner of England, it might be worth getting a referral to the Pain Clinic at Oswestry. This is headed by a Consultant Anaesthetist called Dr Gaspar and he is brilliant. He can also get you onto their Functional Restoration Programme, which is 3 weeks of intensive physio, hydrotherapy and all sorts of methods which can really help.

Exercise is usually great for pain, but after all this time I think you should maybe see a doctor again, as you might be causing more damage rather than helping things
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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  #41  
Old 11th March 2010, 07:01 PM
Sue T Sue T is offline
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Default Re: Went To Scoliosis Sos Today

I can't believe how 'kind' you all are with your diligent replies - thank you once again x I will take on board everything you have said, unfortunately I am not in the Oswestry area.

I dont feel it's pinched nerves, everyone I've seen, talks about a 'spasm' I describe the pain like that of a 'stitch' that is relentless. However I shall perhaps seek out a 'pain clinic' I do know of one near to where I live, my GP has suggested I try it, so did the Physio Consultant, my other problem is I hate bothering people and feel that there are so many people far worse than me, so I feel a nuisance. You'd think at my age I'd be over all that, (a case of old dog -new tricks eh?)
Thank you so much once again Tonibunny
I hope that I will be able to have an opportunity to support someone
Regards Sue T
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  #42  
Old 11th March 2010, 07:23 PM
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Default Re: Went To Scoliosis Sos Today

Ahh Sue, don't think that about your pain, i think its hard for people who do live with the pain we do to comprehend just how debilitating it is. They see us walking, talking, laughing running etc and think well they look all right so they all right and i think if we are told often enough that there is nothing that can be done for us and just get on with our lives we start to doubt ourselves

I am sorry that you are in the inbetween area where surgery is out of the question but you still suffer (not that surgery is a guarentee of no more pain).

I wish there was something more productive i could say or advice to give you. Sorry if this has already been mentioned but have you tried looking into core stability exercises or the Alexander Technique. If you search for Alexander Technique you may find some useful info

I am sure carold uses this technique and is very knowledgable about it

Mark
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  #43  
Old 11th March 2010, 07:31 PM
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Default Re: Went To Scoliosis Sos Today

Hi Sue,

Oh I'm so glad you know there's a Pain Clinic nearby! If it's a muscle spasm then relaxant drugs can help, or you can have trigger point injections if those don't work - I have had those and the results were absolutely amazing

Please don't ever feel that you're a nuisance. Chronic pain is miserable and you have every right to have help with it! Hopefully if you get the muscle spasm sorted then you'd be able to get back to your physio exercises again.

Good luck with the Pain Clinic, let us know how you get on

Toni xx
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37 years old, diagnosed with infantile idiopathic scoliosis at 6 months old with curves of 62(T) and 40(L) degrees. Casting and Milwaukee braces until surgery at 10 - ant release/pos fusion T1-T12, halo traction. Post op cast and then TLSO. Further surgery at 18 (ant release/pos fusion extended to L3 to include lumbar curve, costoplasty) and 25 (another costoplasty). Fusion extended to L4 at 33 (XLIF with 4 pedicle screws and two short rods). Pre-op curves: 76(T) and 70(L). Post-op curves: 45(T) and 35(L). Diagnosed with Ehlers-Danlos Syndrome aged 34; scoliosis almost certainly due to this rather than being idiopathic.
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  #44  
Old 12th March 2010, 01:03 PM
Sue T Sue T is offline
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Default Re: Went To Scoliosis Sos Today

Thank you both to Mark and Tonybunny x
I shall pursue some of the ideas that you have put forward and I shall return! Sue T x
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  #45  
Old 12th March 2010, 01:37 PM
carolad carolad is offline
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Default Re: Went To Scoliosis Sos Today

Quote:
Originally Posted by mark View Post
Sorry if this has already been mentioned but have you tried looking into core stability exercises or the Alexander Technique. If you search for Alexander Technique you may find some useful info

I am sure carold uses this technique and is very knowledgable about it

Mark
Thanks Mark - this gives me a perfect excuse for doing my hard sell on the Alexander Technique

Seriously Sue - I have found the Alexander Technique to be very helpful in pain management. It has improved my posture so I put as little strain as possible on my wonky spine and pelvis. I've actually gained an inch in height since taking AT lessons because I'm not 'squashing' my spine the way I used to - I've learned how to stand taller and move in a way that puts least strain on my body. Someone told me recently that I walk 'like a ballet dancer' - and as someone who always felt incredibly clumsy and awkward, I'm really enjoying this new feeling of being able to move more gracefully

It has also helped me deal with pain on a psychological level - it teaches you how to 'let go' of muscle tension so your body naturally comes into a better alignment. So instead of thinking about the painful area and getting annoyed or upset about it (which just causes your tight muscles to tighten further), you learn how to accept the pain and 'let it go'.... I know this sounds really new-agey and waffly, but I promise it does help! I suppose its allied to things like self-hypnosis and meditation in that way. It doesn't always work of course - there are times when I'm lying there, doing my deep breathing and thinking about everything being relaxed and trying to let go - but there's this wee voice in my head going 'it hurts, I don't like it, its not fair!!!' but if I can get that voice to shut up, I can sometimes make myself feel better!

There is some really useful information and links to teachers in the UK at this site: http://www.stat.org.uk/

Just let me know if you want any more information - I'm only to happy to go on (and on and on and on and on!!!) about AT
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